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Getting Graphic When You Have Multiple Sclerosis

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.